My baby Weighed 18 Pounds and was almost two years old when I carried him into Children’s Hospital


The hardest moments I have ever endured, surrounded the days that lead up to and immediately followed my baby’s chest being cut open.

The moments of  
having his tiny beating heart in the hands of a surgeon,
a mere mortal.

It was almost exactly 22 years ago, he was Christened Easter morning, the day before his surgery. It was a shot-gun baptism.  I had him Christened for the sake of his grandparents and great-grandparents. I never believed that – if there is a God – he would turn away my innocent babe. However, my family needed the solace before Marcus went into the place where spirits don’t always return. I stood quiet and numb through the ceremony, filled with fear and when asked to answer: lying through my teeth.
In my mind I said,
God cannot have this child.
Do not dare to take him from me. 

The next day, while I sat signing the eternal pile of paperwork and before I put my name to one more, I-understand-that-my-child-could-die and you-are-not-responsible, signature line, I looked at the nurse and said, “Tell me, again, why this is necessary.” 

As I remember, her voice was sharp, like a scolding teacher with a wrist whip, and she said, “Because if you don’t, the heart will continue to fail until he dies.”

“How long will that take?” I asked.

Again, in my memory here came a sharp sigh of judgment, or perhaps a sigh of I don’t have time for this, “We don’t know. He would maybe live to be 15 years old. And he could never have a good quality of life.” 
I nodded. I signed. And that night in the hospital all I could think was, What if he dies and I gave up the 15 years I could have had? 
Approximately half of all people with Down syndrome are born with a heart defect. Before heart surgery was available, this was the most  common cause of death for people with Down syndrome. Consequently, once heart repair and heart surgery became an option, the average life expectancy rose rapidly. 

Truly, heart surgery is a triumph.

Even if every time I write about those days, as I sit in a coffee shop, library, or home, I cannot stop the tears from coming and falling without care of who sees, when in truth it is because of heart surgery that Marcus is such a vibrant and strong adult. 

He graduated from the Madonna School a few years ago.
He threw dice on his 21st birthday.
Yesterday he posed for the next musical he is creating: “Great Day, the Musical” – in the spot where he sees the poster will hang. 

I am ever thankful that Marcus heart was mended and he has grown strong.